I like to think of treating IBD as a puzzle. You have to find the right pieces to complete the puzzle, and you want to do it in a timely manner to avoid feeling worse. Sometimes it’s easy, and other times it takes a while to find the piece you’re looking for. If someone were to ask me what the hardest part about having ulcerative colitis is, I would say finding the right combination. As with many autoimmune diseases, there is no one size fits all and no cure. The best thing we can do is find the right formula to manage the disease and hopefully live a normal life.
What are these puzzle pieces, you ask? Here are the five pieces that I think put together a complete puzzle picture: medication, mental health, stress management, sleep, and nutrition. Let’s dive a little deeper into each of these pieces.
1. Medication
Finding the right combination of medication to treat IBD is not easy. I have patients in my support group that have tried every biologic out there, and failed each of them. I am lucky to have been on Humira for six years, which has worked well for me, but there is always a chance of developing antibodies to the medication and being forced to switch. Not to mention making sure the insurance approves of the medication. You can’t imagine how much it costs for these biologics out of pocket! Narrowing this down is a time consuming process, when all we want is to feel better in that moment. Patience is key in this piece.
2. Mental health
We can’t forget to take care of ourselves. I feel the burden of making big decisions regarding my treatment plan every day. Currently, I am in the midst of deciding if I want to switch medication and what I would switch to. It feels like such a gamble because it could make me feel better, but it could also make me feel worse. We just don’t know. The stress of this decision takes a toll on my mental health and makes it hard to see the positives. I could get caught up in the web of anxiety surrounding this decision, or I can leave it to God. Remember that you are not alone and there are others who may be struggling with the same thing.
3. Stress management
It’s not only important to take care of ourselves, but to manage the level of stress we experience outside of our disease. That goes for work, personal relationships, and other responsibilities. Take a look at all the things on your plate and decide what is no longer serving you. There have been many times where I’ve had to remove things from my plate because it was getting overcrowded. Your body knows before you do when it’s experiencing stress and it will tell you if you decide not to listen. This is an area that I know I could be better in.
4. Sleep
My doctor has always reinforced how important it is to get 7-8 hours of sleep each night. I know if I get less than that, I will not feel well and in turn it causes me more stress. I hate when people say “you can sleep when you’re dead!” I would rather be a functioning person in a good mood, than give up my sleep for other things. It is a main priority in the treatment of my IBD and something I am not willing to compromise.
5. Nutrition
Having IBD forces you to re-evaluate what you’re eating. There is no one diet that works for all IBD patients. For me, I have stuck with following a combination of a low residue diet and a Mediterranean diet. The bottom line is, eating a burger and fries from McDonald’s may not make you feel better (shocker!). During Covid, I went a whole year without eating added sugars, and it made a huge difference in how I was feeling. After a while, I no longer craved these types of foods. As I get into remission, I am a bit more adventurous with what I eat, but the second I start feeling worse, I go back to a plain and clean diet that I know I can count on. It’s different for everyone, but being mindful of what you’re eating is a great place to start. The Crohn’s and Colitis Foundation has some great resources as well.
Having some sort of combination of these five elements will hopefully unlock the right formula for you. When one piece isn’t fitting, it throws the whole combination off. You can’t have one without the other. They all work interdependently. Every time I enter a flare, I come back to these puzzle pieces and analyze which area I could improve in. Having this formula keeps me accountable and responsible for staying aware of my body. I hope it does for you too.
What puzzle piece has worked well for you? Is there anything you would add?
Turning Wellness into a Lifestyle 